Have we ever just stopped and thought about how thankful we really aren't? I had that moment today.
We go about our daily lives not thinking twice. Wake up, shower, get dressed, go to work, come home, eat dinner, go to bed... wake up and do it all over again. It's so easy to get caught up in the things that are going wrong that we never stop to think about what's going right.
If you've visited this blog before, you know that my health is my greatest life challenge. If you're a newcomer-- welcome-- then know I have cystic fibrosis and it presents each day with a set of medicines, treatments, and choices that the "average Joe" doesn't deal with.
Today I "met" via Facebook another CFer through a CF group online. He's 35 and just had his first round of IV antibiotics for a lung exacerbation.
WOW.
My initial gut reaction was "You must be so healthy!!!" but thankfully, I stopped myself before sending that. I've been around the CF online community long enough to know that just because your lungs are clear doesn't mean the rest of your body is behaving.
"How does your CF manifest? Do you have other complications?"
"Digestion and liver issues. Acute liver failure."
Yikes.
Among other issues that I'll spare you the details, this guy has a laundry list of problems, complications, and surgery history that made me cringe.
"You must be so healthy!!!" seemed like a ridiculous response now. I was so grateful I didn't send it.
But what it did make me do what stop and reflect on my own life and how thankful I haven't been but certainly should be.
I was last hospitalized December 2014. I recently had my wisdom teeth out with zero complications and barely any weight lost. No, I'm not the healthiest person out there, but I can hold a full-time job and enjoy hobbies, social events, and date nights without thinking twice.
I am so thankful for my health.
Bet you didn't see that one coming. I sure didn't. But today was another friendly reminder that while we all have struggles and trials, we should definitely be thankful for the things in our life that are going well. I know I sure am.
-ARJ
Tuesday, June 6, 2017
Monday, April 18, 2016
A little redneck ingenuity saved the day...
So on a fairly regular basis, I travel for soccer. I coach some high-school aged girls on a club travel team and we travel the state, and a few neighboring states as well, on the weekends. Sometimes Andrew joins me, but not always. This weekend, he came down to the state capital with me because we had plenty of time to kill between games (8am on Saturday and 1pm on Sunday) and I wanted to spend it with him! And boy am I glad...
We got to the hotel on Friday around 8pm. Andrew left to go get food and we munched in the room while watching TV. Around 9:35 I'm getting ready for bed and to start treatment since I have an early morning (need to be at the fields by 7am). I unpack my travel machine and my heart stops.... I have no tubing. Suddenly, my chest feels tight and I don't know what I'm going to do. Andrew was very quick to step up and remind me that he will find a solution and it's his job to take care of me. He put his shoes back on and left without hesitation.
He started driving towards the nearest Walgreens and I called the other one in town (we're actually in a town outside the capital). Time stamp: 9:43pm. They tell me the pharmacy is closed and they don't have what I'm looking for. I begin to cry and ask them if there's any other place they can think of that might carry it. They suggest Walmart. I'm texting Andrew to let him know. Little did I know, he was on the phone with his dad (a nurse) who directed him to Walmart for other reasons...
I call the local Walmart and sob to the nice girl on the phone. She said the pharmacy closed at 8pm, but she will go look outside of the pharmacy... no luck. We talk for awhile and she is starting to freak out with me, understanding the severity of the situation. Her advice was to go to the hospital and ask for one. I thanked her and called Andrew. He was walking into Walmart that moment, but wasn't heading to the pharmacy. He was headed to the aquarium section!! After some time, he returns to the hotel with these items:
25 ft. Aquarium tubing (what pumps air into fish tanks)
Zip-ties
A pack of lighters
A pair of scissors
He cut the tubing to make it a manageable length. We rinsed it out through the sink too. The tubing was just a little too small to fit on the compressor/neb so we used the lighters to soften the tubing and stretch it out with the hotel pen. Then, when it wouldn't stay on the neb, we put a zip-tie around it so it wouldn't go anywhere. With a little bit of Redneck Ingenuity (or Macgyver!), I was able to do treatment that night/early morning.
The next morning, we called a local pharmacy and bought actual compressor tubing, but hear me out friends: should you ever run into a bind like I did, just pick up those items at Walmart and you'll get through the night!
Pics for proof:
We got to the hotel on Friday around 8pm. Andrew left to go get food and we munched in the room while watching TV. Around 9:35 I'm getting ready for bed and to start treatment since I have an early morning (need to be at the fields by 7am). I unpack my travel machine and my heart stops.... I have no tubing. Suddenly, my chest feels tight and I don't know what I'm going to do. Andrew was very quick to step up and remind me that he will find a solution and it's his job to take care of me. He put his shoes back on and left without hesitation.
He started driving towards the nearest Walgreens and I called the other one in town (we're actually in a town outside the capital). Time stamp: 9:43pm. They tell me the pharmacy is closed and they don't have what I'm looking for. I begin to cry and ask them if there's any other place they can think of that might carry it. They suggest Walmart. I'm texting Andrew to let him know. Little did I know, he was on the phone with his dad (a nurse) who directed him to Walmart for other reasons...
I call the local Walmart and sob to the nice girl on the phone. She said the pharmacy closed at 8pm, but she will go look outside of the pharmacy... no luck. We talk for awhile and she is starting to freak out with me, understanding the severity of the situation. Her advice was to go to the hospital and ask for one. I thanked her and called Andrew. He was walking into Walmart that moment, but wasn't heading to the pharmacy. He was headed to the aquarium section!! After some time, he returns to the hotel with these items:
25 ft. Aquarium tubing (what pumps air into fish tanks)
Zip-ties
A pack of lighters
A pair of scissors
He cut the tubing to make it a manageable length. We rinsed it out through the sink too. The tubing was just a little too small to fit on the compressor/neb so we used the lighters to soften the tubing and stretch it out with the hotel pen. Then, when it wouldn't stay on the neb, we put a zip-tie around it so it wouldn't go anywhere. With a little bit of Redneck Ingenuity (or Macgyver!), I was able to do treatment that night/early morning.
The next morning, we called a local pharmacy and bought actual compressor tubing, but hear me out friends: should you ever run into a bind like I did, just pick up those items at Walmart and you'll get through the night!
Pics for proof:
Neb with tubing and a zip-tie to keep it in place.
The aquarium tubing Andrew bought
Very thankful for my creative and quick-thinking father-in-law and my husband who is willing to do anything to keep me well!
-A
Thursday, March 10, 2016
Afflovest-- my opinion
Since I'm rocking some newer hardware, I felt I should give my honest opinion of it. Please know a few things: 1- no one is paying me for this. 2- My opinion is just for information. I do not have a medical license and my opinion should not affect you or your health decisions. 3- What may be right or wrong might not be for you. Please get with your clinic before making any changes.
Here we go!
AffloVest
Basic description: This is another "vest" chest percussion device. It houses the controller on the user's left side in a pocket and the battery on the user's right side in another pocket. I have a size "small" and it has 3 adjustable clips in the front to latch it. It also has several (4 or 5) two-button adjustments in the shoulders to fit the correct length. To put simply, it is cordless.
How it works: With a charged battery (which lasts approximate 3 hours of usage), the vest is turned on by holding down the button with the symbol for ON (one you often see on computers). It will boot up over about 5 full seconds. From there you can run the set program by pressing GO or run whatever setting has been left up by pressing the PLAY button.
You can set a program by using the down arrow until you select Program. This will bring you to a screen to edit the three Sequences it will cycle through on your program. I like this because it allows me to set different types of therapy without having to think about it. Each Sequence can run for a max of 15 minutes.
What the buttons mean:
P- Percussion. This setting vibrates for 1 second on, one second off for the full run time. This is my favorite setting.
V- Vibration. This is a solid vibration for the full run time.
D- Drainage. This targets the lower lobes first, alternating front and back, and vibrates up in different areas. The idea seems to be to knock crud loose and work it upwards. I bet this is even more effective when the user is in a downward facing drainage posture.
Three bars: High intensity
Two bars: Medium intensity
One bar: Low intensity
Your mode and intensity can be adjusted at any point during the therapy session. I saw a "lock" symbol when I set a program, which makes me wonder if it can be locked for kids so they don't change it up. I haven't opened the flashdrive they sent with instructions, so I don't know for sure.
What's included:
When you get the Afflovest, you get a roller storage bag, the vest with connected controller, one large battery, a battery charger, and a wall cord. The batter charger plugs directly into the wall and the battery to charge it. The Vest cannot be used during this time. They do have a wall cord though. This can be plugged directly into the wall and the vest for usage when your battery is dead and you really need it. Obviously, you're bound to the wall at this point, but isn't that what we're all used to anyway? The cord is fairly long so you can sit on a chair or couch. They also include a flashdrive of information. I have yet to open it.
Now the part you've really been waiting for... Pros and Cons
Pros:
-I love the freedom. I love being able to walk around, cook dinner, dry my hair, put on makeup, etc. while I do my therapy. The vibrations are different than a typical air-filled vest, so it's not as violent to the entire body. The vibrations seem deeper and more focused than the air-filled vests, which seem to just try to shake things up without understanding the concept of directional vibrations.
-I like the ease of being able to set the program. I'm pretty tech savvy but I always struggled with the other vests to set cycles. I just ran my time on my one setting and that was it. Now, I feel like I have more freedom with my therapy.
-It works. I'm clearing up some crud. I can feel it makes a huge difference in my day. That's what matters the most in the end, right?
Cons:
-It's heavier than I anticipated. Mine is 11lbs with the battery. Sometimes that's hard for me to put on, or I become winded putting it on, but once it's on it's fine.
-The battery doesn't warn you it's low unless you're looking at it. It just flashes. I haven't had it die on me yet, but I'm sure it will eventually!
-I wish the programs could run longer than 15 minutes, but that's just me being picky.
-This pairs with the weight, but I expected it to be easier to carry with me when I travel. It's still easier than the other Vest, but it's just not what I expected. I'm used to the flimsy vest that I could fold up and pack away (though paired with a big machine), but the Afflovest has the machine built in, so it doesn't fold or pack away as easy as I had hoped. Again, still easier than other options.
-For flyers: it has a lithium battery so the battery cannot be checked. It will have to be a carried with you.
I hope this helps!
-A
Here we go!
Basic description: This is another "vest" chest percussion device. It houses the controller on the user's left side in a pocket and the battery on the user's right side in another pocket. I have a size "small" and it has 3 adjustable clips in the front to latch it. It also has several (4 or 5) two-button adjustments in the shoulders to fit the correct length. To put simply, it is cordless.
How it works: With a charged battery (which lasts approximate 3 hours of usage), the vest is turned on by holding down the button with the symbol for ON (one you often see on computers). It will boot up over about 5 full seconds. From there you can run the set program by pressing GO or run whatever setting has been left up by pressing the PLAY button.
You can set a program by using the down arrow until you select Program. This will bring you to a screen to edit the three Sequences it will cycle through on your program. I like this because it allows me to set different types of therapy without having to think about it. Each Sequence can run for a max of 15 minutes.
What the buttons mean:
P- Percussion. This setting vibrates for 1 second on, one second off for the full run time. This is my favorite setting.
V- Vibration. This is a solid vibration for the full run time.
D- Drainage. This targets the lower lobes first, alternating front and back, and vibrates up in different areas. The idea seems to be to knock crud loose and work it upwards. I bet this is even more effective when the user is in a downward facing drainage posture.
Three bars: High intensityTwo bars: Medium intensity
One bar: Low intensity
Your mode and intensity can be adjusted at any point during the therapy session. I saw a "lock" symbol when I set a program, which makes me wonder if it can be locked for kids so they don't change it up. I haven't opened the flashdrive they sent with instructions, so I don't know for sure.
What's included:
When you get the Afflovest, you get a roller storage bag, the vest with connected controller, one large battery, a battery charger, and a wall cord. The batter charger plugs directly into the wall and the battery to charge it. The Vest cannot be used during this time. They do have a wall cord though. This can be plugged directly into the wall and the vest for usage when your battery is dead and you really need it. Obviously, you're bound to the wall at this point, but isn't that what we're all used to anyway? The cord is fairly long so you can sit on a chair or couch. They also include a flashdrive of information. I have yet to open it.Now the part you've really been waiting for... Pros and Cons
Pros:
-I love the freedom. I love being able to walk around, cook dinner, dry my hair, put on makeup, etc. while I do my therapy. The vibrations are different than a typical air-filled vest, so it's not as violent to the entire body. The vibrations seem deeper and more focused than the air-filled vests, which seem to just try to shake things up without understanding the concept of directional vibrations.
-I like the ease of being able to set the program. I'm pretty tech savvy but I always struggled with the other vests to set cycles. I just ran my time on my one setting and that was it. Now, I feel like I have more freedom with my therapy.
-It works. I'm clearing up some crud. I can feel it makes a huge difference in my day. That's what matters the most in the end, right?
Cons:
-It's heavier than I anticipated. Mine is 11lbs with the battery. Sometimes that's hard for me to put on, or I become winded putting it on, but once it's on it's fine.
-The battery doesn't warn you it's low unless you're looking at it. It just flashes. I haven't had it die on me yet, but I'm sure it will eventually!
-I wish the programs could run longer than 15 minutes, but that's just me being picky.
-This pairs with the weight, but I expected it to be easier to carry with me when I travel. It's still easier than the other Vest, but it's just not what I expected. I'm used to the flimsy vest that I could fold up and pack away (though paired with a big machine), but the Afflovest has the machine built in, so it doesn't fold or pack away as easy as I had hoped. Again, still easier than other options.
-For flyers: it has a lithium battery so the battery cannot be checked. It will have to be a carried with you.
I hope this helps!
-A
Saturday, February 27, 2016
One Year in our New Home!
Just thought I'd share really quickly-- we've closed on our house a year ago today! Since then, we've made several positive changes (remodeled a bathroom, painted rooms, rebuilt a cabinet, etc.) and I'm very happy with where we are in our lives.
New challenges as we continue to move forward? Paying for medicines... but that will be another post for another day. Thankful for resources and a mom who is doing a lot of leg-work for me.
Have a wonderful weekend!
-A
New challenges as we continue to move forward? Paying for medicines... but that will be another post for another day. Thankful for resources and a mom who is doing a lot of leg-work for me.
Have a wonderful weekend!
-A
Saturday, February 13, 2016
New Vest!
Some of you have been with me long enough to remember this post about my Vest, where I gave it some love. My more recent friends might only remember this other post about my Vest where I wasn't sure if we were friends or not. Either way, my Vest was always around giving me grief and giving me clear lungs. But now, I can retire it because it's time to make room for a new Vest... the Afflovest! There's no question: we're already BFFs. When I learned that this Vest might be a real option (around October 2015), it was already a part of my day. I thought about it LITERALLY every morning. Any day that I overslept and didn't have time for a morning Vest sesh, I thought about how I could at least get in 10 minutes of the Afflovest while I dry my hair and let the dog out.
If you haven't heard of it, I recommend checking out their website and the YouTube videos posted by people who got the Vest and are demoing it. The biggest advantage that it brings is I'm not hooked up to vacuum cleaner hoses, but free to walk around with the cordless technology! It doesn't use air, like the old Vests do, but more true vibrations. It has 3 settings, Vibration, Drainage, and Percussion (my favorite). Anyway, not trying to do a promo for them, but I had to share in my excitement. I mean look at me! I've never been so happy to wear a Vest!
In other news, not much else has changed. Soccer season just picked back up, I'm singing in the adult choir at church (as I have time), and Zoe is still obsessed with the ball.
Oh! One thing I did was sign up for the Rock CF Kick Backs program. It's an awesome group of people who, as part of the Rock CF Foundation, provide new tennis shoes to CFers who want to get running or need a new pair from running so much! It's a really awesome program and I was THRILLED to get my tennis shoes. Got to keep working hard to stay healthy!
Have a great weekend and a Happy Valentines Day!
-Annie
If you haven't heard of it, I recommend checking out their website and the YouTube videos posted by people who got the Vest and are demoing it. The biggest advantage that it brings is I'm not hooked up to vacuum cleaner hoses, but free to walk around with the cordless technology! It doesn't use air, like the old Vests do, but more true vibrations. It has 3 settings, Vibration, Drainage, and Percussion (my favorite). Anyway, not trying to do a promo for them, but I had to share in my excitement. I mean look at me! I've never been so happy to wear a Vest!
In other news, not much else has changed. Soccer season just picked back up, I'm singing in the adult choir at church (as I have time), and Zoe is still obsessed with the ball.
Oh! One thing I did was sign up for the Rock CF Kick Backs program. It's an awesome group of people who, as part of the Rock CF Foundation, provide new tennis shoes to CFers who want to get running or need a new pair from running so much! It's a really awesome program and I was THRILLED to get my tennis shoes. Got to keep working hard to stay healthy!
Have a great weekend and a Happy Valentines Day!
-Annie
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